[ Inglese] “But You Don’t Look Sick”: Staying Positive While Living With a Chronic Illness

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Topics include: Patient Stories

When you’re living with a chronic cancer, the way you feel may not necessarily show. How do patients deal with public perception? During this Patient Café segment, a panel of chronic lymphocytic leukemia (CLL) patients, including Michele Nadeem-Baker, Jeff Brochstein and Jeff Folloder, discuss some responses they’ve gotten after sharing their diagnosis and ways they stay empowered. Watch now to learn more.

This is a Patient Empowerment Network program produced by Patient Power. We thank AbbVie, Inc. and Pharmacyclics for their support.

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Transcript

Have any of you dealt with a situation where you tell somebody what's going on for you and they say, well, you don't look sick.  What do you say?  What do you do when somebody says that to you? 

I didn't need to.  I was pretty lethargic and sedentary.  Now I'm an avid power walker knocking out between 30 and 35 miles every week.  I do it pretty fast, too.  I'm trying to maintain my weight, and I'm trying to maintain my energy level.  So, no, I don't look sick.  Sometimes I feel sick.  I just did a week and a half on the road.  I missed a bunch of naps.  I'm a little tired.  Actually, I'm a lot tired, and I'm looking forward to a nap this afternoon.  And I'm going to take one, and it's okay. 

But this is part of my new normal.  My new normal is the way I feel doesn't necessarily show.  And my wife understands that.  My family understands that.  The people close to me understand that.  My doctors understand that.  So if people don't get it, that's their problem, not mine. 

But as Jeff said you do have to—you have to take charge.  And I continue to, as Jeff was saying, I continue to work out in the way I do throughout even infusion.  Continue to go to the gym and use weights and do cardio.  And when the weather's good enough up here, which it's now turning to not be, do whatever I can outside as well as in the gym because you feel better. 

And that is one way I felt I could take control when everything else was out of control health?wise.  So it also helped me in that way, in that respect as well as to be healthier physically.  So it's very important, I'd say. 

I've never appeared sick.  I've always been physically fit.  There was a time for about two years since I was diagnosed that I had some lymph nodes that went away once I started the ibrutinib.  People never associated me with some sort of chronic or acute illness.  And when I've told them what I have and I've told them about the condition, you know, I've also followed up with just trying to create awareness around this, send them some links, sending them some videos.  Maybe sending them the original video I did at ASH last year, just to really create awareness around it.  And it's really up to them if they want to absorb it, on Jeff's point.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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Page last updated on September 9, 2019